Tag Archives: Dystonia

Heralding the Dystonia Medical Research Foundation’s 4th Annual Bronx Zoo Walk, I couldn’t be more hopeful of all the future holds for our community of Dystonia patients, mothers, fathers, sisters, brothers and friends…sharing challenges, life struggles and hard-fought victories.

With Dystonia Zoo Walks burgeoning across the country – 13 in 2018 – awareness is on the rise as we celebrate the promise of tomorrow. Fundraising is how we push that promise to fulfillment. Each of us bears the potential to activate our friends, families and colleagues to cure Dystonia. Start with determination, add in a good measure of persistence, and a dash of keeping expectations at bay. Strength in numbers means we’re not asking for the moon. Remember, our fundraising efforts sow the seeds of hope.

Gather at the Bronx Zoo on Sunday, September 16 for a memorable day of Dystonia awareness, fun and FUNdraising. Enjoy refreshments and festivities and then roam the zoo at your leisure. Proceeds benefit the Dystonia Medical Research Foundation. With collective activism, we can cure dystonia.

Recently, I blew up my Universe – shopping for shoes. Formerly a forbidden pleasure, I literally soared to new heights trying on all sorts of heels. Though I must confess, I don’t know how my fellow females bear the discomfort of those pointy toes and stilettos that send me teetering and tottering.

Notwithstanding the daily roller coaster ride presented by my Dystonia, my feet have led a relatively ho hum life, long relegated to the safety of Aerosoles’ “Forgive” model and a sparing assortment of sneakers, plus a few pairs of carefully chosen and largely unexciting boots.

So fancy me, perched on a footstool in DSW surrounded by treasure troves of ladies footwear in an endless variety of heights, shapes, styles, sizes, fabrics and colors – feeling as deliciously decadent as the most luxurious chocolate dessert. Gingerly, I eased my feet into a pair of 3 inch black suede pumps, thinking, like the Little Engine That Could, “I think I can, I think I can,” and, just like that shiny blue engine, I actually could! Suspended in a state of disbelief – and by a pair of magnificent for-me-miraculously-high heels, I strutted across the room, a battery-powered cyborg towering over the profuse displays of ladies shoes surrounding me!

As Dystonia Awareness Month approaches, I’m thrilled to fill in first place on my Dystonia Awareness Dance Card with the 3rd Annual Bronx Zoo Walk on September 10. This FUNdraising event has become my pride and joy, a day to celebrate awareness and make our way one step closer to realizing our dream of curing dystonia. We should all remember:

When a star is born, They possess a gift or two
One of them is this, They have the power to make a wish come true

When you wish upon a star, Makes no difference who you are
Anything your heart desires will come to you

If your heart is in your dream, No request is too extreme
When you wish upon a star, As dreamers do

The Bronx Zoo Walk is a day for Dystonia dreamers to come together at the spectacular Bronx Zoo to gaze upon the amazing wildlife roaming the lush greenery and dream about days to come when we are free as an uncaged beast from Dystonia.

Why: Because we can make our dreams come true… Raise awareness of dystonia and funds for better treatments and a cure. Another reason: Our Zoo Walk Challenge is back. Every new and incremental donation over last year is being matched dollar-for-dollar by an anonymous donor!

You can also dance your way into dystonia awareness by participating in the Dystonia Medical Research Foundation’s Dystonia Moves Me campaign, which runs throughout the month of September. Obtain materials using the following link: www.dystonia-foundation.org//shop/product_detail/14088

Did you ever think someone in a wheelchair could tap dance? Well think again. With special gloves sporting metal plates affixed to their palms and fingertips, the members of Mount Sinai Rehabilitation’s tap dancing class skillfully manipulated their hands from “heel to toe” along to a crooning Jerry Lee Lewis. I couldn’t help but tap my toes in time as I observed their display of skill and joyful tempo. Attired in tap shoes and a glittery “Gotta Dance” tee, Mary Six, a former Rockette who lives with dystonia, taught us about brushing and cramp rolls as I languidly swayed to the enticing music. Then Mary Six waltzed around the room demonstrating with her feet the unique steps each participant should execute with their hands.

They say where there’s a will there’s a way. Everyone in this class has certainly found their way, giving me pause to reconsider what we really need to accomplish our goals. “Disabled” you say? Perhaps you need to review your dictionary, starting with the meaning of “ABLE!”

Yesterday was my first occasion participating in New York City’s Disability Pride Parade and I couldn’t have been more proud and inspired by the very best New York City has to offer as I marched with Mount Sinai Rehabilitation. As our joyous celebration wound its way through the city streets on a hot Sunday – 5,000 richly diverse human beings strong – we forgot the pounding sun as we shouted our disabilities from the rooftops.

“Disability Pride” teems with an inherent irony: Take pride in a lack of ability? Yes, we announce ourselves with pride and incite inclusion. What is more empowering than accepting – and loving – ourselves, imperfections and all? We puff out our chests in celebration of how we persevere…and more…notwithstanding our disabilities and of all we overcome amid the daily muck muddying but by no means devaluing our lives. Whether we’re wheelchair bound, deficient in sight, gait, hearing or speech, struggling with learning or mental deficit, suffering from a disability that is “hidden” or glaringly evident, we take heart in our robustness of spirit as we bend and sway but never break in response to the challenges we face and conquer.

Post DBS, my life has been revolutionized by a startling revelation: Traveling from Point A to Point B is as “effortless” as moving from one foot to the other! I exist in a surreality I never could have imagined. Who would have thought I’d ever be in a position to compare and contrast smooth and twisted gait! Conquering distance has become user-friendly. Has NYC shrunk? This on-the-go rookie well knows the act of walking straight is deceptively simple – even miraculous – and with profound effect. Now that all my ducks are lining up in a row, I attach new meaning to the words “independently mobile.”

I stand before you “Pam 2.0” – action-oriented, driven and efficient – roaring out of the gate to tackle my errands and responsibilities with the vigor of an NFL linebacker. I’d never grasped the smooth side of multi-tasking or the effervescence of living life on the run. Dystonia erected a prison of limitations constraining my every effort…in ways even I didn’t fully appreciate. Sojourns out of my neighborhood loomed daunting. Rain or inclement weather provided a convenient excuse to stay home. For many years, life passed before me in lackluster shades of grey. My involuntary movements and their psychological toll crowded out the innumerable possibilities that lie within arm’s reach when we’re not squandering energy struggling with basic bodily operations. Now I feel free as a bird spreading her wings for the first time.

They say life is about the little things. For me, life is about a wealth of glorious but supremely basic minutiae virtually invisible to most of us…empowering us to enjoy a magical day!

At first I was afraid
I was petrified
Kept thinking I could never live
Without you by my side
But then I spent so many nights
Thinking how you did me wrong
And I grew strong
And I learned how to get along…

After a tumultuous 40 year relationship – plaguing me with a myriad of annoyances – I’m finding it challenging to cut the cord with my anticholinergic, even now that my brain bionics are waiting in the wings. Flexing its muscles, my anticholinergic is determined to stick around for Act II. However, I’m equally determined to boot him off the show.

Hardly known for my patience, I’ve exhibited unprecedented forbearance in the painstakingly slow process of Walking The Plank, even, shockingly, proactively taking a detour from the weekly weaning schedule when my walking grew funky. It’s all a delicate balancing act of amping up the power to compensate for lost “juice.”

With grad school awaiting me in the fall, I’d love to restore my short-term memory and normalize my urination so I’m not constantly rushing out of class for an impromptu rendezvous with the ladies room. The dream of being pill free shines strong, fortifying me with resolve to go the distance, no matter how long it takes. So Mr. Anticholinergic, as Gloria Gaynor sang so well:

Go on now go, walk out the door
Just turn around now
‘Cause you’re not welcome anymore
Weren’t you the one who tried to break me with goodbye?
Did you think I’d crumble?
Did you think I’d lay down and die?
Oh no not I, I will survive…

In 2012, I shared my deepest, darkest phobias about my speech in a post titled “May I Have A Glass Of Water.” Notwithstanding 4+ years pounding out my anxieties on this site and finally conquering my self-consciousness over my gait – ironically at a time when my involuntary movements are fading away – I continue to entertain a disgruntling hyperawareness of every word I utter.

During conversation, I find myself a decidedly un-detached observer, appalled at the sounds that just emerged from my mouth despite my earnest efforts to enunciate. I’ll practice a word in isolation again and again only to mutilate it during conversational speech. Too many words continue to evade me and I’m starkly aware of the abundance of sounds I misform.

Since DBS, I’ve been operating on speed dial, sentences tumbling out faster than I can articulate them. In an effort to climb out of my ditch, I resort to conversational CPR, searching my inner thesaurus for synonyms to toss out to my confounded listener…or literally spelling out words l-e-t-t-e-r b-y l-e-t-t-e-r. Conversation presents a bout of oral gymnastics that leaves me exhausted.

Recently, I stood on line at Starbucks on a Saturday morning, all set to tackle a monumental challenge: ordering a Grande Decaf Soy Latte. The barista stared at me in confusion, then slipped a blank piece of paper and pen across the counter. Gulping down my pride, I dutifully wrote out an order I knew I’d never properly execute orally. Perhaps next time, I’ll opt for tea!

As the Dystonia Medical Research Foundation honors our canine friends this February with their Dogs For Dystonia Virtual Walk, I’m moved to consider all my miniature schnauzer – Ellie – has meant in my life and the invaluable lessons she has taught me.

Bright-eyed and bubbly, loving, loyal and eternally optimistic, Ellie has infused my world with her exhilarating jubilance and unwavering affection. After an eon navigating life as a solo act, Ellie is a beacon of light brightening my days. She’s my steadfast companion virtually everywhere I go and I’ve connected with a cornucopia of maternal instincts that have long simmered beneath the surface yearning for expression. I wholeheartedly embrace my role as Ellie’s momma and find myself reveling in the joys of motherhood.

With the dramatic improvement in my gait post DBS, my energy level has risen closer to – though certainly not matching – Ellie’s and we’ve become partners in crime, exploring the neighborhood and local parks with vigor. Indeed, the changes Ellie has wrought in me are a huge reason why I reached for the brass ring and embarked on my DBS journey. Ellie is my most enthusiastic cheerleader of my newfound mobility and we celebrate our new life every day!

Ellie and I are thrilled to participate in Dogs For Dystonia to pay tribute to our faithful canine friends and the countless ways they enrich our worlds. We proudly join with the Dystonia Medical Research Foundation, fellow patients, friends, and their pets to celebrate our hope that one day we will indeed eradicate dystonia!

I encourage you to visit the Dogs For Dystonia website, where we’ve enlisted our “best friends” as fundraisers and share our heartfelt stories of how our pets have changed our lives:

Sir Isaac Newton, take note, my Dystonia has served as a vivid example of your 3rd Law of Motion gone haywire: For every [voluntary] action there’s an equal and opposite [involuntary] reaction.

Now that the involuntary kinetic forces generated by my voluntary movements have begun to magically disappear, walking is no longer a contact sport. I feel as if I’ve fallen down a wormhole and emerged into a parallel universe where Newtonian mechanics have drastically simplified. My alternate reality gives me pause as I adjust to my newfound freedom. Who knew walking is as easy as putting one foot in front of the other and telling your legs where to go? Destinations that formerly loomed as remote don’t seem quite so far away.

When I trudged around the city with my walker, I measured distance by the corresponding depletion in my energy and operated on a permanent power outage. Every ounce of my being directed an overwhelmingly focus to the technical details of getting from Point A to Point B…with little thought for my destination – and scant attention to the scenery along the way. Post DBS, my energy quotas have completely transformed. I make my way around my neighborhood with power to spare enjoying the local landscape. Think of me as a bee buzzing along on full throttle as I relish the “conserved” energy I previously expended on the mechanics of walking.

I’m not the only one benefitting from my newfound energy. My puppy is thrilled to have a new training partner. Now she’ll have to learn to keep up with me (lol)!

Having been a “solo act” for a little over a week, I’m ready to – knock on wood – announce my new status! The occasion of our break-up was simple: in a miraculous burst of post-DBS reality, I came to the realization that my shiny blue walker had outlived his usefulness. At its genesis, our relationship stood a marriage of convenience. My inner stubborn mule protested his attentions – until it became abundantly clear my new friend offered benefits! The rock by my side, he protected me from a precarious loss of balance, carried my packages…and my puppy, and offered a spare seat on a desolate stretch of street.

Now that I’ve left my walker by the wayside, I find myself in a strange new reality. At times, I reach for him as I leave my apartment. After all, over the course of 2+ years, his constant companionship became a force of habit and, I’ll admit, a bit of a safety blanket. Life without him may be strange but it’s neither cold nor empty. Not quite used to navigating the local terrain without my hot wheels, I instinctively head towards ramped walkways when stairs have pleasantly become an option. Mind you, my gait still has its quirks and I entertain an unfounded concern that the full force of my involuntary movements will return.

Last month, I aced my starring role during neurosurgery. Now that my neurostimulators have been powered on, I find myself in a constant state of heightened hyper-awareness of my movements making my body the “star” of every moment.

This new chapter in my DBS saga began at my first programming session. I arrived determined to keep rising expectations at bay. Deftly manipulating her remote control unit, my savvy programmer began to work her magic. She turned the key in the ignition and took each “launch pad” on my electrodes for a test ride in search of signs of rough driving ahead.

Like my oral meds, neurostimulation can exert unwanted “side effects.” Now that all systems are go, I’m perpetually on the lookout for an inimical twist, twitch, jerk, grimace or spasm as I continually search for signs that the electric pulses in my brain are exerting some untoward effect. I struggle to recall the details of my involuntary motions pre-DBS for purposes of comparison but find this to be a futile task thanks to the ever-changing choreography of my Dystonia.

In the meantime, I’m officially electronically enabled. I stand before you a BATTERY emPOWERED FEMALE “humming” strong at 2.5 volts! With my handy remote, I can power myself on and off like a TV set. Plug me into an outlet, and I’ll light up the room!

As I made my way to my first DBS programming session during the chaos marking morning rush hour, I was abruptly reintroduced to the inhumanity inhabiting my fair city. Hardly the picture of health, I stood braced against my walker, a colorful flowered scarf sculpting my recently shaven head, watching taxi after off-duty taxi unceremoniously sail by me – patently ignoring my hand wildly flailing through the air in an act of deliberate motion having nothing to do with my Dystonia. I couldn’t help but surmise that cab drivers hold no interest in attending to my walker. Where was Sir Galahad, galloping up Third Avenue to rescue me on his black and white checkered horse majestically draped in yellow?

I concluded that I needed to park my walker at the curb behind me and hail a taxi as a solo act. Of course, as soon as I turned towards the sidewalk, my gallant appeared, sharply braking beside me. Putting his fellow cab drivers to shame, he whisked my walker into the trunk with aplomb, After all, it doesn’t take Mr. Universe to manipulate a few pounds of folded metal.

I hold abject disappointment in NYC’s private transportation corps, which, for a pretty penny, is my first line of defense against the perils I face using public transportation.

Hollywood’s leading ladies have nothing on me and my starring role in a “surgical trilogy” featuring a brilliant neurosurgeon, his drill, cutting-edge guidance technology, and two electrodes taking a slip into my brain for an ongoing adventure of electrical proportion. Best supporting actor goes to the strong-armed “villain” in this medi-drama, the metal vise that fiercely immobilized me every step of the way. The hero, my Mount Sinai neurosurgeon, cool as a cucumber, assumed command over his troops in the OR. His team took no prisoners, bolting me to the operating table to set the stage for the drilling…but with my neurosurgeon controlling the scene, this dystonia damsel was hardly “in distress!” As for the “awake” part, our tete a tete during surgery was largely surreal as my “leading man” filled my field of vision during our big dramatic moment and I lacked a bird’s-eye view of the surgical scene. I’ve absolutely no recollection of the drilling.

Having considered – and rejected – DBS oh so long ago, I needed a pinch to jolt me into reality as we traipsed about the hospital – vise securely in place – on our way to a pre-op CT-scan. You’ll find my verdict – since overturned – on this site in the article “Promises, Promises.”

With DBS, the waiting is the hard part. Until that all-important first procedure set a bar on my expectations, my overactive imagination embarked on a joy ride over the prospect of two “awake” brain surgeries in the span of one month. For those Dystonia warriors considering DBS, rest assured that the “idea” of these procedures is far more daunting than their reality – especially that fearsome metal vise. After the numbing injections, it’s smooth sailing ahead. If you can handle life with dystonia, you’ve got DBS!

Once the surgeries are completed, this surgical thriller morphs into a tale of suspense. Stay tuned for my BIG MOVIE ENDING, dramatically revealed in 3 to 6 months…

Living with a rare disease like Dystonia, I find myself self-conscripted into service as a fundraiser. It’s all rather simple: If I don’t invite people to care about my little-known disorder, who will? Curing Dystonia takes a village of patients, friends, and families…not to mention the medical investigators working diligently on our behalf!

I’ve also discovered that FUNdraising can indeed be FUN. Dystonia Zoo Walks empower us to advance our cause while checking out lions, tigers and bears, oh my!

For those who live in the New York City area, I hope to see you on September 18 for a memorable day of Dystonia fundraising and awareness at the Bronx Zoo. We offer a unique “twist” on traditional charity walks, as there’s no formal walking course. Jump-start your Sunday with family-friendly festivities – perhaps win a raffle prize – and then meander your way through the fabulous Bronx Zoo. Of course, you’re welcome on board Team Dystonia Muse! Can’t join in the fun? We’ve got you covered. Support us by making a donation.

I’ve been a blond, brunette and redhead. Now I sport a skinhead. At the altar of DBS, the sacrificial lamb is my hair. So how to make the best of my untenable situation when there’s no use crying over spilled milk? My go-to guy is my “secret weapon:” the handy PhD Dystonia forced me to earn in “Making Lemons Into Lemonade!”

Turning Lemons Into Lemonade never disappoints. I laud the virtues to be found in identifying positive outcomes for our negative situations without unduly minimizing our struggles. My friends may reassure me that it’s ONLY my hair – which will certainly grow back – but my solace hardly lies in downplaying the significance of our locks. After all, I’m a female with a telling history of life-defining dos. Rather, I find my comfort recognizing the importance of our hair by making a donation. With a few trips to Google, I’d surveyed the landscape and located a nonprofit, Children With Hair Loss, more than happy to claim my mane, chemical highlights and all.

For those about to part with their hair or seeking to lighten their load, check out the following organizations spreading sunshine with their good works:

For those wondering how the prospect of two “awake” brain surgeries becomes palatable, let’s consider my relentless left foot, which seizes every small step as an opportunity to insist on an arduous detour. Walking takes on a whole new “twist” when the ever-present intervening destination is your next forward-intending movement. Even the shortest sojourn with my puppy becomes a true labor of love.

The upper echelons of the thermostat – even relatively moderate temperatures – stand amongst my triggers. At the onset of spring, exhaustion settles in for a multi-season stay, sentencing me to a summer of heavy breathing punctuated with plentiful naps. Ambulating ceases to be a means to an end and becomes an all-consuming focus, draining every ounce of my energy at the speed of light. As an added bonus, my tortured summer strolls invite back pain to settle in for an extended stay.

Here’s an attractive offer: Let’s shave off your hair, immobilize your head in a vise, drill a hole in your skull, insert an electrode into the right side of your brain, and wake you up for some fun in the sun before closing that hole. Then, invite you back to do it all again, left side this time – before implanting two battery-powered neurostimulators into your chest and snaking wires under your skin that enable us to activate those electrodes with electrical currents.

No, it’s not some twisted version of electric shock therapy but Deep Brain Stimulation (DBS) – perhaps not shocking your socks off but, hopefully, improving your neurological movement disorder, which is why you place that bet. Why not embark on a wild ride to slay the never-ending, hair-raising roller coaster commandeering life with dystonia?

Of course, your vanity interjects itself. After all, they’re shaving your head twice, replacing your lush – or not so lush – locks with a barren plain. As for the “awake” part, fancy chatting with your surgeon while he’s navigating an intruder into your brain. Then again, you find yourself trudging your way through your 30th college reunion, holding on to your walker for dear life as a once-familiar campus morphs into a forbidding obstacle course. Watch the impossible become plausible when mastering each step presents a triumph of will. Those looming procedures take on a whole new light, vanity and apprehension fading into luxuries you can ill afford.

Highlights from the Bronx Zoo Walk on Oct. 4, 2015

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Email: ps@dystoniamuse.com

What seems like a lifelong experience with Dystonia began with a "mis-step" when I was 8-1/2. Dystonia may have staged a coup over certain body parts but my heart and soul remain firmly my own. I'm a friend, daughter, sister, creative mind, honorary auntie, fan of the quantum mechanical, hopefully one-day spouse, now also health activist.